Today Scott and I went out for a little while so we could have a more private discussion. About things no parents should ever have to talk about in regards to their children.
Brian is no longer a minor and we need to accept his decisions even if we don't agree with them.
In the next few weeks he will be making decisions that are of the most importance...not ones like should I drink or smoke, not ones about what type of condom to use, but ones like Advance Directives, about if he's going to take the advice of the oncologists and go to transplant.
It's important that to provide Brian the best support in his decision making, that we the parents have already had those discussions.
Of course, we HAVE already discussed these things 10 years ago. This was a private discussion to make sure we are still on the same page.
We are now ready to have this discussion with Brian and Stephanie.
Wow, as a parent I can now officially say that I would have been way happier to hear about an unplanned pregnancy or a drunken debacle...those issues are so infinitely unimportant in the light of the current situation facing us.
Scott and I have been married 25 years this last past December...we sure never envisioned our future this way, but it sure has made us stronger.
It snowed another few inches today, it looks like that will boost our total for the weekend to about 30". I do SO love snow....we got these really cool snow pellets today, looks like little Styrofoam balls covering everything. Of course Brian being very concerned with the environment didn't like the Styrofoam reference, so I think he and Stephanie decided they were unflavored dip n dots...they stuck all over the dogs, though since Chibi is white, you didn't really notice them on him. He just did his little cold dog dance....
Sunday, February 28, 2010
Saturday, February 27, 2010
September 11, 2001
If you are watching the Olympics, you might notice that today NBC is doing a bit about Gander Newfoundland, Canada. They are discussing and interviewing the residents of Gander and how they had to deal with the aftermath of the terrorist attack. About how this small town opened their airport and homes to the many planes and the people on those planes that were diverted from the US airspace.
In the years following September 11, I have had many people ask me in reflection, "where were you on 9/11." I don't think anyone was ever ready for my response.
On September 11, when the first plane struck the first tower in NYC, I was on Hamilton Road driving Brian to a chemotherapy appointment. I heard it on the radio in the car. 10 minutes later when we arrived at the Cancer Clinic for our appointment, they told me that Brian would be the only one to get chemotherapy that day because his chemo was already to go, the pharmacist had mixed it and sent it to the clinic already.
No one else would get chemo that day because she (the pharmacist) had just heard the news about the terrorist attack. Her husband worked in the towers and she was understandably distraught.
I don't know what happened to her husband, I never asked. But I do know that on September 11, a whole lot of people understood how I felt the first time I heard my 14 year old son had advanced aggressive lymphoma. Their world, the world they knew changed in an instant.
Can you imagine how it was for Brian?
Can you imagine how it is again?....to face death so young...to beat it...to face it once again...?
In the years following September 11, I have had many people ask me in reflection, "where were you on 9/11." I don't think anyone was ever ready for my response.
On September 11, when the first plane struck the first tower in NYC, I was on Hamilton Road driving Brian to a chemotherapy appointment. I heard it on the radio in the car. 10 minutes later when we arrived at the Cancer Clinic for our appointment, they told me that Brian would be the only one to get chemotherapy that day because his chemo was already to go, the pharmacist had mixed it and sent it to the clinic already.
No one else would get chemo that day because she (the pharmacist) had just heard the news about the terrorist attack. Her husband worked in the towers and she was understandably distraught.
I don't know what happened to her husband, I never asked. But I do know that on September 11, a whole lot of people understood how I felt the first time I heard my 14 year old son had advanced aggressive lymphoma. Their world, the world they knew changed in an instant.
Can you imagine how it was for Brian?
Can you imagine how it is again?....to face death so young...to beat it...to face it once again...?
today's thoughts
Today after a discussion with one of Brian's previous pediatric oncologists, it seems that we are all on the same page for the best treatment, baring any unexpected test results from the bone marrow and PET scan.
Last night I searched through the CDC data base to read any trial programs that might apply to Brian. Out of 137 applicable ones, there were about 6 to consider, but none that we feel are viable at this time. Some of the reasons were both location, and toxicity.
Because Brian does not have any health insurance, (he has applied for medicaid) it looks like we will be unable to consider an out of state hospital such as Robert Wood Johnson University Hospital where he was treated the first time. That is unfortunate for several reasons including their excellent reputation.
1. They are the closest to us travel time wise. (approx. 2 hrs.)
2. Scott's work is much closer to there, enabling him to visit more often. (about 1/2 between home and the hospital).
3. We are intimately familiar with the area and all of the services.
4. We would be working with a medical staff that has know Brian for 10 years and has a personal vested interest in him.
5. SOUTHWEST BURRITO (because yes, when you are living in a hospital for 30-100 days you should be able to get decent food to live on....).
6. Personal support system of friends because we lived in that area for 23+ years.
Our other choices in transplant centers are being evaluated now by Scott, Brian, Stephanie and myself. As always, the four of us work together to make the best choices under the worst conditions.
As a sidebar, Stephanie has decided at this time to put off further schooling so she can contribute her salary to the overwhelming expenses we face. Aside from Brian's physical and emotional sacrifices in facing childhood and now young adulthood cancer, no one has made more sacrifices then Stephanie for Brian's well being. In both having to grow up fast, and in choosing to put off her future plans. She is a young woman to be proud of, especially under the worse circumstances.
Last night I searched through the CDC data base to read any trial programs that might apply to Brian. Out of 137 applicable ones, there were about 6 to consider, but none that we feel are viable at this time. Some of the reasons were both location, and toxicity.
Because Brian does not have any health insurance, (he has applied for medicaid) it looks like we will be unable to consider an out of state hospital such as Robert Wood Johnson University Hospital where he was treated the first time. That is unfortunate for several reasons including their excellent reputation.
1. They are the closest to us travel time wise. (approx. 2 hrs.)
2. Scott's work is much closer to there, enabling him to visit more often. (about 1/2 between home and the hospital).
3. We are intimately familiar with the area and all of the services.
4. We would be working with a medical staff that has know Brian for 10 years and has a personal vested interest in him.
5. SOUTHWEST BURRITO (because yes, when you are living in a hospital for 30-100 days you should be able to get decent food to live on....).
6. Personal support system of friends because we lived in that area for 23+ years.
Our other choices in transplant centers are being evaluated now by Scott, Brian, Stephanie and myself. As always, the four of us work together to make the best choices under the worst conditions.
As a sidebar, Stephanie has decided at this time to put off further schooling so she can contribute her salary to the overwhelming expenses we face. Aside from Brian's physical and emotional sacrifices in facing childhood and now young adulthood cancer, no one has made more sacrifices then Stephanie for Brian's well being. In both having to grow up fast, and in choosing to put off her future plans. She is a young woman to be proud of, especially under the worse circumstances.
Friday, February 26, 2010
what is a stem cell transplant
If ultimately chemotherapy protocol ICE and stem cell transplant is the choice that Brian makes, then it is good for you to understand exactly what he faces. This is a good explanation of the procedure.
It will be painful, unpleasant and take a terrible toll on his body. This we have already experienced in his first battle with lymphoma. Additional concerns are the fact that Brian had many platelet transfusions last time and towards the end started to experience severe reactions to them, even when pre medicated against a reaction.
It will be painful, unpleasant and take a terrible toll on his body. This we have already experienced in his first battle with lymphoma. Additional concerns are the fact that Brian had many platelet transfusions last time and towards the end started to experience severe reactions to them, even when pre medicated against a reaction.
The good, the bad, and the ugly...
the title to one of my favorite movies...and I used to work for a relative (cousin i think) of one of the actors...really salt of the earth good people.
The good....nope..got nothing..Brian has recurrent lymphoma..looks like stage 4 but we'll know for sure next week)...nothing good there...
The bad...well...chemotherapy protocol called ICE....(can't do CHOP like last time because chances are it will destroy his heart and he'll die of heart failure instead of cancer)(too much adriamycin )
The ugly...following ICE we'll transfer to a transplant hospital for a stem cell transplant (formally known as a bone marrow transplant) where he will spend 30-100 days in the hospital depending on the type of transplant he has.
Next week...PET scan, Bone Marrow sampling....
stay tuned to this channel for more not so exciting news,....
Miss D, Brian got the video game and really loves it, and it couldn't have come at a better time...he's going to send you an email later...Thanks so much Jen.
ho ho snow
I love snow...maybe not so much when I have to get out to take Brian to the oncologist....thank goodness thanks to my sister we have a plow....
Thursday, February 25, 2010
a note from Brian
Brian wants everyone to know how all the well wishes really lifted his spirits yesterday. He's feeling a little overwhelmed at the thought of fighting cancer once again, and he has new concerns he was too young to really worry about before and they are weighing heavily on his mind.
But I know Bri and he will work it out in his head, it will just take a little time. Today he is trying to catch up on some much needed sleep, and he's running a low grade temp, but is otherwise doing well.
Tomorrow will be where we get the information that will get things moving quickly. There is some surgery to put in a portacath, as well as finding out about the bone marrow sampling and the spinal taps. Brian had to endure about 15 spinal taps last time and he is reluctant to again.
We are getting quite a bit of snow, and hopefully that will not make the trip to the hospital a problem.
Lynn, and Debbra and Renee are all going to share some books with Brian, which is great, because you wouldn't believe how many books can be read while SITTING....Thanks Guys....
But I know Bri and he will work it out in his head, it will just take a little time. Today he is trying to catch up on some much needed sleep, and he's running a low grade temp, but is otherwise doing well.
Tomorrow will be where we get the information that will get things moving quickly. There is some surgery to put in a portacath, as well as finding out about the bone marrow sampling and the spinal taps. Brian had to endure about 15 spinal taps last time and he is reluctant to again.
We are getting quite a bit of snow, and hopefully that will not make the trip to the hospital a problem.
Lynn, and Debbra and Renee are all going to share some books with Brian, which is great, because you wouldn't believe how many books can be read while SITTING....Thanks Guys....
Wednesday, February 24, 2010
Today's musings
Brian feels much better having had the drain and the stitches removed by the surgeon on Monday. Sleeping a little better without having that to roll on.
Yesterday Brian was experiencing the anger...today he's moved on to being depressed...I figure by the time we see the oncologists on Friday, he'll have gotten to acceptance, well...at least if you know Brian at all..as much acceptance as they are ever going to see.......
We also noticed that Dorney Park is right across the street from the hospital. We hope for one of those hospital visits that we are located on the side that faces Dorney Park, all the colors and lights will certainly be a nice distraction from the treatments, and maybe even something we can look forward to treating ourselves to when Brian feels up to it. Though to be honest, we live about 10 minutes from Great Wolf Lodge which is an indoor water park and I think a better idea...no sun to burn his pale redheaded skin. But we'll have to choose outings like that carefully....some things are not allowed based on white and red cell counts and platelet counts.
And I guess making Brian help build the deck this summer to totally off the plate...(and probably just the building of the deck as well)....darn kid will do anything to get out of chores...
Yesterday Brian was experiencing the anger...today he's moved on to being depressed...I figure by the time we see the oncologists on Friday, he'll have gotten to acceptance, well...at least if you know Brian at all..as much acceptance as they are ever going to see.......
We also noticed that Dorney Park is right across the street from the hospital. We hope for one of those hospital visits that we are located on the side that faces Dorney Park, all the colors and lights will certainly be a nice distraction from the treatments, and maybe even something we can look forward to treating ourselves to when Brian feels up to it. Though to be honest, we live about 10 minutes from Great Wolf Lodge which is an indoor water park and I think a better idea...no sun to burn his pale redheaded skin. But we'll have to choose outings like that carefully....some things are not allowed based on white and red cell counts and platelet counts.
And I guess making Brian help build the deck this summer to totally off the plate...(and probably just the building of the deck as well)....darn kid will do anything to get out of chores...
Second Diagnosis
Brian was cancer free for many years. He has suffered some serious health issues from the chemotherapy but has been doing well. A week after Christmas he felt a lump on his side. This lump grew alarmingly fast changing in size and consistency. On February 12 2010, they removed that lump and discovered it was a necrotic tumor that upon initial tests looked like lymphoma. Monday we got the final pathology report back and it was lymphoma. The same lymphoma he had before. What an unpleasant surprise.
First diagnosis
Brian was 14 in 2000.
He was first diagnosed with anaplastic large cell lymphoma in December 2000.
It was a difficult time for him. But with the help of his Aunt Debbie, we found that humor got us through a lot of really rough times.
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